Sharing Qualitative Research Data: Identifying and Addressing Ethical and Practical Barriers

共享定性研究数据：识别和解决道德和实践障碍

• 批准号: 9390653
• 负责人: James M Dubois
• 金额: $ 50.38万
• 依托单位: WASHINGTON UNIVERSITY
• 依托单位国家: 美国
• 财政年份: 2017
• 资助国家: 美国
• 起止时间: 2017-08-17 至 2021-06-30
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/9390653
• 关键词: Address; Adoption; Algorithms; Attitude; Bioinformatics; Case Study; Clinical; Computer software; Data; Data Analyses; Databases; Deposition; Development; Ensure; Ethical Issues; Ethics; Evaluation; Feedback; Fostering; Genetic; Guidelines; HIV; Health; Health behavior; Human; Institution; Institutional Review Boards; Interview; Journals; Knowledge; Literature; Minority Groups; Names; Ownership; Participant; Policies; Process; Publications; Qualitative Methods; Qualitative Research; Recommendation; Recruitment Activity; Regulation; Research; Research Design; Research Ethics; Research Methodology; Research Personnel; Research Training; Resource Sharing; Resources; Risk Factors; Sampling; Science; Stigmatization; Students; Survey Methodology; Surveys; Telephone Interviews; Textbooks; Time; Training; Trust; United States National Institutes of Health; addiction; base; cost; cost effective; data sharing; formative assessment; health science research; implementation science; improved; innovation; interest; member; novel; repository; software development; trait

Project Summary This project will identify and address ethical and practical barriers to qualitative data sharing (QDS) in health sciences research. Qualitative research has unique value in understanding health behaviors and traits that are stigmatized and hidden such as risk factors for HIV or a genetic propensity to addiction. Accordingly, a lot of qualitative data are sensitive, and the data are provided within relationships of trust. NIH policy guidance states that “all data should be considered for data sharing.” Sharing qualitative data offers cost-effective ways of providing important benefits to science, researchers, and students. However, qualitative research data are rarely shared and concerns exist regarding participant confidentiality, data ownership, and the time burden and cost of de-identifying data. This project builds logically across three aims culminating in the systematic dissemination of a QDS Toolkit that includes stakeholder-informed guidelines for QDS and data anonymization support software and data curation processes that have been refined through a formative evaluation process with qualitative researchers. 1. We will engage diverse stakeholders to identify ethical and practical barriers to QDS. We will conduct in- depth interviews and surveys with qualitative researchers, institutional review board members, data curators, and former research participants to explore attitudes toward and recommendations for QDS. 2. We will conduct a qualitative data sharing trial. Thirty qualitative researchers will deposit data with a partner data repository. To reduce the burden of QDS on researchers, we will develop qualitative data anonymization support software, guidelines for QDS, and efficient data curation processes. Researchers will provide feedback on all of these resources to guide revisions. 3. We will develop, evaluate, and disseminate a QDS Toolkit. QDS Toolkit content will be based on literature reviewers, stakeholder input, and user feedback obtained during formative evaluation of the toolkit. We expect it will contain ethical guidance provided through case studies, as well as all materials developed through Aims 1 and 2. We will target four groups for dissemination: (a) data repositories; (b) qualitative research journals; (c) qualitative textbook authors; and (d) research institutions. For each group, we will identify current practices, provide access to the QDS Toolkit, recommend adoption of specific practices, and track adoption. This project will have a high impact on qualitative health research by increasing transparency and openness, promoting secondary data analysis, and facilitating research training, while demonstrating respect for participants, researchers, institutions, and regulations. The QDS Toolkit and all materials developed during this project will be made publicly available at no cost to users.

项目概要 该项目将识别并解决定性数据共享（QDS）的道德和实际障碍 健康科学研究。定性研究在了解健康行为和特征方面具有独特的价值。 被污名化和隐藏的因素，例如艾滋病毒的危险因素或成瘾的遗传倾向。 许多定性数据都是敏感的，并且这些数据是在 NIH 政策指导范围内提供的。 指出“所有数据都应考虑进行数据共享”。共享定性数据提供了具有成本效益的方法。 然而，定性研究数据却为科学、研究人员和学生提供了重要的好处。 很少共享，并且存在关于参与者机密性、数据所有权和时间负担的担忧 以及去识别化数据的成本。 该项目逻辑上跨越三个目标，最终系统地传播 QDS 工具包 其中包括利益相关者知情的 QDS 指南和数据匿名化支持软件和数据 通过与定性研究人员的形成性评估过程而完善的策展过程。 1. 我们将让不同的利益相关者参与进来，以确定 QDS 的道德和实际障碍。 与定性研究人员、机构审查委员会成员、数据的深度访谈和调查 策展人和前研究参与者探讨对 QDS 的态度和建议。 2. 我们将进行定性数据共享试验，三十名定性研究人员将数据存放在一个数据库中。 为了减轻研究人员 QDS 的负担，我们将开发定性数据。 匿名化支持软件、QDS 指南以及高效的数据管理流程。 将提供所有这些资源的反馈以指导修订。 3. 我们将开发、评估和传播 QDS 工具包内容。 文献评审员、利益相关者的意见以及在形成性评估过程中获得的用户反馈 我们希望它将包含通过案例研究提供的道德指导以及所有材料。 通过目标 1 和 2 制定。我们将针对四个群体进行传播： (a) 数据存储库； (b) 定性研究期刊；(c) 定性教科书作者；以及 (d) 研究机构。 小组，我们将确定当前的做法，提供对 QDS 工具包的访问，建议采用 具体做法，并跟踪采用情况。 该项目将通过提高透明度和开放性对定性健康研究产生重大影响， 促进二次数据分析，促进研究培训，同时表现出对 参与者、研究人员、机构和法规。QDS 工具包以及期间开发的所有材料。 该项目将免费向用户公开。